FEDERATION OF ORGANIZATIONS
Responding to People with Special Needs
STORY BY MAUREEN TRAXLER • PHOTOS BY MIRANDA GATEWOOD

Over the past 33 years, the Federation of Organizations has developed a unique approach to serving people with special needs by focusing on peer support within self-help programs. For example, the agency taps the experiences of senior citizens to provide support services for the frail elderly population and people who have conquered the hurdles of mental illness to assist others in recovery.

With an eye on the growing needs of specific segments of society, Federation sponsors the Foster Grandparent program, in which senior citizens 60 years of age and over who want to continue to make contributions to the community, guide and nurture at-risk children and help them develop age-appropriate skills. The not-for-profit has also targeted ancillary needs of the aged and their families, providing respite care — spending time with the elderly while caretakers get a breather — and counseling services on such related issues as generational transfer of assets, long-term care for disabled relatives and establishment of trusts.

“We’ve kept ourselves fast on our feet,” says Barbara Faron, executive director, who has been with the agency since 1978. “We understand that needs change and we’ve been able to modify and adapt our programs to the changing needs of the community.”

Its beginning
Federation was organized in the throes of the collapse of New York State’s psychiatric hospital system — the first community it served was comprised of people with serious mental illness.

In 1955, at the height of the in-patient population at psychiatric hospitals, New York State was housing 93,000 people. Many parents and family members of people in those institutions supported their loved ones on a volunteer basis, by organizing holiday parties, supplying small personal items, wrapping presents for patients, and most importantly, advocating for their good treatment in a safe environment.

In the 1960s and ’70s, the state was pressured to deinstitutionalize the care of people with mental retardation, developmental disabilities and mental illness and moved away from “indefinite hospitalization,” reducing the number of patients in its facilities. As deinstitutionalization unfolded, two-thirds of the patients released from hospitals in the first wave went back to their families. Over the last 30 years, the number of state-run psychiatric beds dropped to approximately 5,000.

Federation grew out of the needs of that time. In 1972, an alliance of mental health advocacy groups volunteering in various state hospitals formed the Federation of Organizations.

“Family members fought for developing community based services and sought legislative reforms for relief as a means to transition from an institutional based care system to community based,” notes Faron, “because there were not sufficient programs and services to care for them.

“Mental health is not just another serious chronic illness;” she adds, “it’s probably the scariest one for people.” During a recent interview with Networking magazine, Faron sketched out that fear, explaining that often people with mental illness find they’ve lost their jobs, which brings economic destitution, or they’re living on disability benefits. “But, unlike the past, there are treatments, and people can return to a reasonable level of living in the community,” she continues. “Case managers are available to help people access resources to put their lives together.”

Mental health services
At the time of deinstitutionalization, lack of affordable housing for people with mental illness became a major obstacle in providing community based care. And, over time, the group home model of the 1980’s moved toward independent, scatter-site housing with rental subsidies and staff support. Federation manages a large supported housing program in which individuals pay up to 30% of their income toward rent. Faron acknowledges, though, that Federation is “trapped by the high cost and lack of availability of affordable housing on Long Island.”

Federation seeks to involve families in the transition to life in the community and offers a 12-week program in their West Babylon facility in which family members learn about mental illness, its symptoms and options. Faron says, “A family support group has developed and people are meeting monthly to check in with one another.”

Assertive Community Treatment (or ACT) teams assist young people who are difficult to engage in treatment. Young people often shun their medical regimen because of uncomfortable side effects from medications, or because they don’t want to admit they have a problem. These clinical treatment teams operate in the Town of Babylon and provide comprehensive services that support recovery from mental illness.

Client success
“It’s somewhat sad in certain ways,” comments Faron about people with mental illnesses. “If you have heart disease or diabetes or cancer, you wouldn’t feel ashamed or afraid to tell people or admit it. You’d probably be sad and know you have a struggle ahead of you, but you wouldn’t be afraid to tell anybody; or ashamed because if people know that a friend is mentally ill, they may think something bad of you.”

“There is a lot of hope and many success stories,” says Ruth Del Col, director of development, who plays an integral role in the development and growth of all of Federation's programs. Her claim is backed by the New York State Office of Mental Health, which reports that recovery rates for people with even the most serious mental illnesses are almost as high as they are for people with other chronic illnesses.

At the organization’s facilities in Queens, Nassau and Suffolk, over 30 people in mental health recovery are working for the agency in various capacities, from clerical staff and maintenance employees to drivers and peer counselors – some for more than 5 or 10 years. One former client graduated from Fordham University with a Master of Social Work degree and has been working with the Federation as a peer advocate for four years.

“Federation’s staff is the key to its success,” adds Del Col. “They’re so committed to their work, so hopeful. They’re so willing to go the extra mile and they don’t even know they’re going the extra mile – it’s an everyday thing for them.”

Meeting widespread LI needs
“Federation is constantly looking for the needs of the community,” adds Del Col. Its Foster Grandparent Program, operating in Suffolk County, allows low income seniors to earn a stipend while providing needed encouragement and assistance to youngsters in schools and Head Start programs.

“It’s not just people doing good deeds, which it is,” adds Faron, “but there’s a focus to it. Foster grandparents assist children in the adjustment to the academic environment and in the mastery of needed skills.” Children, parents, teachers, senior citizens and communities realize a benefit.

At the Cohalan Court Complex in Central Islip, Federation brought in the Foster Grandparent Program in an effort to provide a diversion for children accompanying parents who are attending court proceedings. In order to extricate the children from the adult situation, the foster grandparents read and play games with them to pass away the hours. Del Col points out that the Federation has now placed its first bilingual grandma! Many senior adults on Long Island are choosing to remain here, entering senior communities and condominiums, or at times, remaining on their family homesteads to live out their golden years.

Federation’s Senior Companion Program matches senior citizens with other frail seniors who are trying to remain independent in their homes but need a little attention. They’re friendly home visitors who are often the elderly person’s “contact with the world,” says Faron. They help alleviate isolation, depression and are often “the first warning system” if something is wrong.

Federation’s Respite Care Program in Suffolk County involves people of all ages who wish to help aging citizens remain alert and vital. They offer respite care, stepping in to take care of elderly folks while their younger relatives are relieved of the burden and worry. They also remind seniors to take medications. They receive an hourly wage provided by Federation through a grant from Suffolk County. Federation has begun services to help families of aging adults handle the inevitable problems of family assets and long-term care. And, throughout the Federation’s operation area from Brooklyn to Suffolk County, they assist people with disabilities who need an appropriate level of care while living on a limited income. On the horizon, the organization sees the growth of congregate care facilities that will provide enriched services and case management while creating a stable quality of life.

Learning from people
People who have had experience teaching and encouraging others have become major contributors to the services of the Federation of Organizations. “As a not-for-profit, we have the orientation of providing services at the least possible cost,” remarks Faron. Federation’s well-structured programs make it possible for people to give back to their peers or create a social network for themselves. They often become role models, getting out into society and demonstrating a positive side of life.

“Our emphasis is on giving opportunities to people whose voices are\ not usually heard, and integrating them through programs into our\ work force and our communities,” says Faron. “We see ourselves more\ as problem solvers, rather than nay-sayers.”

“Foster grandparents assist children in the adjustment to the academic environment and in the mastery of needed skills.” Children, parents, teachers, senior citizens and communities realize a benefit.”